Random Tid bits

1. This week my sister had her baby girl. What I thought would be a really positive experience has flipped into being difficult. Margaret (my niece) was breech. They got her flipped, so my sister was induced. The umbilical cord was wrapped around her legs and arms. Off to an emergency C-Section she went. My sister lost a lot of blood.  
   
   They took Margaret, and put her in the NICU. She was having mini seizures, so she got put on a cooling mat. I thought in the photos she looked more like her brother Emerson that has Trisomy 18, than her other brothers. 
   
   
2. When my sister was pregnant she got a blood test. All results showed that Margaret is normal. We now know she does have Trisomy 18 like Emerson does. 
   
   
3. I've been feeling excited with a new baby about to happen, sad that she had to be taken via c-section, angry that her brothers that have no chromosome problems will have even more attention taken from them, and not knowing how to feel. I love my nephew Emerson,  but he's a lot of of work. He has had tons of medical issues. He’ll never know what it’s like to live without pain. 
   
   
   
   
   
4. If someone taught a Psychology course...my family that has at least 3 carriers of Trisomy 18 would be a great topic. Should someone that wants to have kids, have them if they carry this to pass on? So much could be brought up: God, Life, Quality of Life, Medical Needs, Late Term Abortion, and so on. Late term abortion would have never been an option, for my sister, but it’s a topic that would be brought up. It's hard to know how to feel and talk about. We put other animals down that are in pain, but we don't with humans. I'm not saying we should. I just don't know how I feel about it all. 
   
   
5. To make this random, online learning is going to work...I think. We've had our bumps. I took Isaak in twice, for tech support. I thought it was his account. Turns out he was using Teams in the browser, and not the downloaded app. Errors occur with that. He's good now. What's really wonderful is that he got a new ipad on Friday. It will work so much better than the old PC they gave him. Isaak likes that he can hear the teacher! No random kids talking. Homework is all put in one place.
   
   The district has made adjustments along the way. Kindergarten, first and second graders now have 1/2 days, with bigger breaks. I think that's a smart move.
   
   What do you think about online learning? Is it working where you live?

Send Positive Vibes

My nephew Emerson has been having seizures. While it's fairly common for children with Trisomy 13 and 18 to have them the medicine he was on didn't seem to help them. He was on the highest dose. If the switched his brand of med then a side effect happens - it would lower his bone density. His bones are already not very strong. I don't think medical marijuana is legal yet in Nebraska.

They haven't figured out what to do.

This weekend he has 20 or so seizures. :(

I watched a few. He basically pauses for a bit. Then gets really happy when it's over. I would think a seizure would make someone completely wore out. I was so clueless about seizures I had to go look up information on them.

On Monday he got a EEG. It was so bad they admitted him into the hospital right away.

Evan, his oldest brother is in 7th grade, but they still don't like the idea of their kids being left home alone after dark. My oldest sister Angie went over there last night, and I'm going over tonight. My parents helped get their youngest Edison to and from preschool.

I do hope they come up with a plan for Emerson. It sucks having him in the hospital. He can pick up other illnesses there, he misses his brothers, and the rest of the family pitches in a lot.

Emerson and Edison on a Go-cart at the Pumpkin Patch:

We have a car in the shop from the hail damage. We only have a rental car for 3 days. That car they may total out. You know that saying, "When it rains, it pours."? I'm beginning to think it's never going to stop pouring.

Is it "pouring" where you live?

All Better

My nephew Emerson didn't get out of the hospital until Friday. He had an infection where his feeding tube was put in after Christmas. Later we learned that part of it fell off inside him. The worst part of the whole situation was that the surgeon didn't want to see him when my sister called him initially. The doctor said, "He'll be fine." Shaking my head - what?

When my sister messaged me at work about this I messaged back telling her that it had to be an infection, and to call our Pediatrician Doctor Harrison (my kids go there as well). Doctor Harrison saw Emerson within an hour, he called the Surgeon's office, "Yes! You are seeing him! He has an infection!" By that time it had spread, was really red, the redness was hot, he had a temp, a high white blood cell count, and Emerson was not a happy camper. The Surgeon proceeded to tell the Pediatrician that he didn't need to be seen. Anyhow Doctor Harrison won that fight. The Surgeon got some not so nice comments from my sister at the hospital.

Emerson had antibiotics, slept a lot, his infected area drained a lot. Once he could have surgery to take his feeding port out to put in a new one they did. He is doing better, but still tires out easily.

The hospital's therapy dog came by right as Emerson was about to leave.

I guess it sounded like Emerson said, "All Done!" when they got in the car. He does say a few words, but not consistently.

By the time they started to ride up their hill he was clapping.

Emerson was smiling a lot because Edison and he kept hugging.

Have you ever had a hospital stay? What did you have to go in for? I think my boys have had more medical care than I ever have when they were babies.

Emerson Standing Like it's No Big Deal

I haven't shown my nephew Emerson in awhile. Many older readers know about Emerson. I do have some newer readers that do not.

He was born with Trisomy 18 AKA Edward's Syndrome. In the hospital babies born with this, and Trisomy 13 are called, "Incompatible With Life". It is because many are born with a hole in their heart, in their brain, or have other severe issues.

Emerson hasn't had it easy, but he hasn't had it as rough as many others with his genetic condition.

I could get into all the stuff he has had done, he's doing pretty good, so I'm not going to. He will have to get an MRI on the 10th for an eye surgery coming up.  It's to double check if there is fluid on the brain, but he has no other symptoms to go along with that. It helps that we have many nurses in our family that know what's what.

Emerson has been practicing being in the crawl position, sitting and in the stand position. One fun thing I got to watch is him playing with a car. Isaak pushed the car towards him, and Emerson pushed it back. He thinks his brothers are funny to.

The only thing he's missing in these photos are his glasses. They do help him see better, but they fall down a lot.

He stood for a few minutes. Then he got excited, and started to tilt off to one side.